Interview with Dr M R Rajagopal, Chairman Emeritus of Pallium India

This is a transcript of an interview Dr Koshy Jacob had with Dr M R Rajagopal, Founder Chairman of Pallium India. Pallium India is one of the 3 charities that Revise Radiology supports. Their main mission is to provide palliative healthcare to the underprivileged in India.

An Introduction from Dr Koshy Jacob

Dr Koshy Jacob: Dr Rajagopal, is a true luminary in the realm of palliative care. He's often referred to as the father of palliative care in India. As a result of that, he also received the Padma Shri in 2018. That is the highest civilian award in India, for his distinguished service. I came across Dr Rajagopal when my father was in terminal care a few days before he died. We were trying to make a decision about what intervention to involve him. He had advanced dementia and the doctors had given him an NG tube. We were trying to decide how long and where to get a balance. A balance between prolonging and enhancing the quality of life, as well as alleviating suffering.

Speaking to Dr Rajagopal was a life changer for us and for my father. In the sense that my father was able to die with dignity. He passed comfortably with treatment that helped him go peacefully. And I'm very grateful to you, Dr Rajagopal, for that work.

Dr Rajagopal’s work has been rooted in compassion and a deep understanding of patients' experiences. That extends far beyond his clinical practice. He's been instrumental in advocating for policy changes at a national level. Also improving access to palliative care education. That fosters a holistic approach to health care that recognises that the human being is beyond the disease. There's a human being behind it. That is what we signed up for when we gave the Hippocratic Oath, which is quite interesting.

The film that was made about Dr Rajagopal is called The Hippocratic Oath. It was narrated by David Suchet, whom many of you in the UK will know as Mr Poirot.

Dr Rajagopal is the founder chairman of Pallium India. It is a palliative care non-governmental organisation formed in 2003 and based in Kerala. It is our pleasure in Revise Radiology to support his work. We are still trying to work out the mechanism by which we can do that. Now, the film called Hippocratic: 18 Experiments in Gently Shaking the World, was released on World Palliative Care Day on 14 October 2017. Dr Rajagopal, the film is interesting, of the references to the Hippocratic Oath. The message of the oath is something that healthcare seems to have strayed away from, in both our opinions. For those who have not watched the film, could you summarise the message of the film? Why people should watch it and what brought you into palliative care in the first place?

Pallium India's mission

Dr M R Rajagopal: This is an honour and privilege, particularly because we have a mission. It started a quarter of a century back and is still in its infancy. Even now less than 4% of the needy in India get any palliative care and the misery is extreme. Thank you for giving me visibility. About the film, it was conceived and created by a couple in Australia who run a film company. They make films for a living, but along with that, they also make films with the theme of palliative care, as a service. They conceived it, and it evolved over many years. During our conversations, I told him and his wife about how my life was influenced by Mahatma Gandhi. He called the movie The Hippocratic, 18 Experiments and gently shaking the World. Those 18 key messages from Mahatma Gandhi are subtitles before each section of the film. I came into palliative care because as a medical student, I experienced a cousin suffering excruciating pain from cancer. Since then, as a medical student and as a young doctor, I went on seeing people in pain and suffering. I also noticed that the medical system was avoiding seeing that suffering.

Doctors and nurses were forced by circumstances to turn away from that suffering. There was no way they could cope if they confronted it. Then I became an anaesthesiologist and started doing nerve blocks. The patients taught me that they were not made of nerves and that they were human beings with emotions. A British nurse by the name, of Gilly Bird introduced me to the science of palliative care. So together with a lot of my colleagues, I started the movement. It is still in its infant stage, unfortunately. Kerala has only 3 % of India's population. About 50% of Keralites who need palliative care get it. Especially the poor. Even the rich do not get it, in Kerala. They continue to suffer in corporate hospitals where they're receiving no palliative care. But outside of Kerala, we are working in 24 of India's 29 states and in two union territories with a team of project coordinators. It is slow progress, but we are making progress.

Commercialisation of Healthcare in today's world

Dr Koshy Jacob: Healthcare has become a big business and often at the expense of very poor people. But also at the expense of middle-class and well-off people. It doesn't seem to distinguish it. The only difference is that people who have money can have something left after it. Whereas people who are poor, they end up in debt even after they die. Their families end up having to pay for medical treatment. This is a specific question for radiology. What specific role do you think radiology has had to play in families falling into death and not having money to pay for the treatment that they need? I realise radiology with its very expensive treatments and investigations can be crucial to find out what's wrong. Sometimes it's knowing the balance between finding out, keeping people comfortable and giving them palliative care. Do you have something you can say about that, Dr Rajagopal?

Dr M R Rajagopal: Yes, indeed. About the first point, you are very right. The middle class are driven below the poverty line. And if you would like some data, it appeared in a Lancet publication. In 2015, The number of people driven below the poverty line by catastrophic health expenditure. Take your wildest guess. It was 55 million Indians, 55 million. I have the reference. This is happening all around us. We refuse to see it. The very poor are subject to another issue. You asked about radiology. It's unfair to talk about radiology being a problem. It's about medical science as a whole. We learnt it from Western countries, and we practised what we learned. Our doctors go to the UK, learn the latest technology, import the equipment, and practice everything. Interestingly, we don't import social workers. We bring only technology and expensive things. Instead of discussing ethically what should be done in the medical system, it just says, get the scan done. How can I tell you if I don't know what you have? That means a huge chunk of the population, certainly at least one-third that they need any health care.

After they have spent some money, they are asked to do a scan and come back and they don’t go back because they can't afford it. This is the reality. That's one major part of the problem. Another problem is, it's not only radiology. Till very recently in 2019, communication was not something taught to medical students. I once asked a group of medical students to tell me their experience as a patient or as a family with the healthcare system, whether it be good or bad. One of the girls stood up very angrily and said, it's not like a patient or a family member but as a medical student. She was in the radiology room where a sonogram was being done. And the sonologist just said that the fetus was not viable. The expectant mother was right there on the table, having a bombshell thrown at her with no warning at all. There is a lack of empathy and compassion. The problem is also that it was never discussed in classrooms. Things have changed since 2019, it is now in the MBBS curriculum. But it will take a quarter of a century before that gets into practice.

Dedication to the Hippocratic Oath

Dr Koshy Jacob: I studied at Christian Medical College in Vellore, which you probably know about. It's dedicated to compassion and treating people with dignity. We joined medical school with noble visions of helping patients. But we do get discouraged later. Or at some stage, corruption enters where the health system is so commercial and the vision starts to fade. And suddenly you're in a situation where you may be working in a scan centre and you get a commission for the whole commission structure. The doctors send the patient for a scan and then the scan pays them a commercial commission for sending. It creates this whole corruption in the medical sector which really saddens me. Especially in India, but I'm sure it happens in many parts of the world. In the NHS, it doesn't work like that so much, at least not at that level. But there's certainly incentivisation. How can doctors sustain their initial vision and fight for change in that area?

Dr M R Rajagopal: You will consider me a palliative care fanatic for saying this. Really, I believe the introduction of palliative care into the MBBS curriculum has brought humanity in. I worked for a long time at Calicut Medical College where I started palliative care. There were 200 medical students. Every year in those years, at least 20 would get trained in palliative care. After the whole six-week course, many would stick to palliative care.

There are so many people who come in with passion and empathy. But that is taken out of them because there is no other way. When we show them another way, I'm sure many will follow. I already see it happening in Kerala. I can also see it happening elsewhere in the future. They need a path to be shown and many will follow. Not all, but, many will.

Empathy in Radiology

Dr Koshy Jacob: When we go through radiology and specialist training, I've often noticed when a patient comes into terminal care. The physician in the general or A&E department asks for a CT scan. The patient is dying and so the question gets raised, what role can radiology play in helping people die with dignity or rather not play? Because every radiology examination can be uncomfortable. It's an additional trauma for the patient who is coming to the end of their life. Of course, in the UK, we call ourselves clinical radiologists. We are not just technicians, we are meant to be part of the clinical decision-making, which is why a lot of us come from a clinical background. I did MRCP before I did radiology. You get a lot of those communication skills then. In terms of radiology, and helping with palliative care, could you tell us a little bit about that and how we can foster an empathetic approach?

Dr M R Rajagopal: It's not only for the radiologist, whatever the speciality. Essentially, we are all doctors and all doctors are also human beings and sometimes we forget that. But as doctors in India, the duty of the health care provider is defined officially by the Bioethics Union of ICMR. And the duty of the healthcare provider is to mitigate suffering. There exists no exception to this rule. It’s important for anaesthetists, palliative care physicians and radiologists to remember that our duty of care to the patient is to mitigate suffering. On that final day of their lives, they shouldn't die alone outside the radiology room. They should be surrounded by the family giving love and receiving love, being able to convey a final message. And sometimes I think it is important for any clinician, including the radiologist, to be able to stand up and say, Look, this is just not done. What's the point? We cannot satisfy your academic clinical curiosity at the expense of the welfare of a human being.

Palliative Care

Dr Koshy Jacob: I absolutely agree with this. This is the empathetic approach that we must foster in radiology. When we met last week, which was a real pleasure, you mentioned that palliative care in India needs to be different to what is practised in the West. Especially when it regards the UK, for example, palliative care is often around end-of-life and pain relief. You mentioned other conditions and how your organisation deals with other long-term conditions. I've spoken to many family members who have parents with dementia and other conditions. If you even mentioned the thought that perhaps you should have a chat with a palliative consultant, or medicine consultant. It's no, that's for cancer. That's for the end of life. Can you elaborate a little bit about how palliative care in India may be different to what we have in the UK?

Dr M R Rajagopal: The WHO definition is 21 years old and it's about a mile long. But we go by the simple definition, palliative care is the mitigation of serious health-related suffering. Now, what conditions cause serious health-related suffering? That would be very different between the UK and the rest of the high-income world, which is mostly Euro-American countries. 85% of the world, not only India but all low and middle-income countries where health care, including primary care, is suboptimal. Tell me, what should I do when a person following a stroke or a spinal cord injury is lying there with a huge pressure source? With recurrent urinary infections, shut up inside four walls for three years, hence dying a slow, painful death? What doctors are we if we walk away because a paraplegic does not warrant palliative care in the UK? The cause of serious health-related suffering is a wider range of disease conditions. We include frailty of old age, we include chronic pain, we include paraplegia and hemiplegia following a stroke. It is not the diagnosis. The diagnosis might be different. The most illustrative question was asked by a Ugandan palliative care nurse working in the field. She was confronted, by a woman in obstetric labour and she took her to a hospital. Her boss questioned her saying, Why? That's not your job. You are supposed to do palliative care. She replied saying, I am from that community. If I find somebody in suffering, I don't care about your definition. I'm not going to walk away. I think that nurse could be a guru. Many of these conditions causing suffering are what we look after. That means the gap between the UK and India in access to primary care would increase the demand for palliative care. Then somebody may ask me, But palliative care is not the answer. The answer is improving health care. I agree. Yes, but till then for the next quarter of a century, sorry, I'm not prepared to walk away.

Pallium India's Operations

Dr Koshy Jacob: The fact is that in the UK, while palliative care looks after a particular aspect of a patient's care, there is a wider aspect. You mentioned social and rehab services. All that is dealt with and there's a bit of a holistic approach. But what does Pallium India do? How does Pallium India do a little bit? The bit they can do in Trivandrum and around those areas in Kerala is to bridge the gap in palliative care. You also have a few centres around the country. Tell us a little bit about Pallium India and what you're doing.

Dr M R Rajagopal: We call it the DEF model - Demonstrate, Educate and Facilitate. In Trivandrum, we look after 4,000 to 4,500 patients with seven home visit teams, multiple outpatient clinics, et cetera. Here we demonstrate palliative care so that students and trainees can learn from that. But we do multiple courses. If you go to our website and look at the link for training, you will see that we run about a dozen different courses, many of them virtual. Educating healthcare providers in palliative care, and facilitation. We have a team of project officers and coordinators headed by one person with headquarters in Trivandrum. Others work with the local state government and the National Health Commission State Office. Also the hospitals, the individuals who want to start palliative care. They are in different zones. So between the demonstration in Trivandrum, education across the country and facilitating development across the country, we hope to reach 10 million people in 10 years. That's our goal.

Revise Radiology's contribution

Dr Koshy Jacob: That's an ambitious and fantastic goal. How do you think we as an organisation, Revise Radiology, can help Pallium India towards its goals and ambitions?

Dr M R Rajagopal: The third edition of the Oxford textbook carried a quote, We are citizens of our world. We all have joy in future or none. I believe we should be working towards needless relief from serious suffering. And not only as radiologists but as human beings also, there's a lot that we can do. Dr Koshy, you came across palliative care in Kerala through a family member, but others may have a cousin or somebody. Maybe you can just facilitate access to palliative care for them. We also have a telehealth team which works at the national level. It will be a privilege for us to support anybody who needs help. Secondly, of course, we need resources. What you spend on a cup of coffee, you can imagine what difference it will make to somebody. It could feed them for a whole month here among the poor people in the villages. But also be advocates. Many centuries back, Rudolph Virchow said, Physicians are the natural attorneys of the poor. Please talk about palliative care. Please talk about relief from suffering. I hope Revise Radiology will consider coming out with a position statement. Also a recommendation for all people interested in radiology, especially in the low and middle-income world. The importance of the ethics of it, the way in which our practice can cause suffering, and how to avoid falling into that trap. You're already helping and I thank you very much for that. That is not only the money, We’re so strengthened to feel that so many people are behind us. Thank you for doing that.

Conclusion

Dr Koshy Jacob: As we draw this conversation to a close, I want to really thank you, Dr Rajagopal, for sharing your insights and experience with us. I would really recommend that anyone who hasn't watched the film, watch it. It's called Hippocratic. It's available to buy on Vimeo and we will share the link to buy. It's a very small contribution to watch it and I think you'll really be inspired by it. Now, we've delved into the intersection of radiology and palliative care. The topic is so seldom explored but holds a great deal of significance. Today we've also discussed the challenges, opportunities, and immense potential that lies in recognising and addressing the needs of patients. Beyond their physical ailments, treating them as human beings and ensuring their dignity in all stages of their healthcare journey. Especially alleviation of suffering. I believe it is now on us, the healthcare providers, to continue this dialogue. To learn from one another, and to strive for an integrated approach that truly serves the best interests of our patients. Thank you once again, Dr Rajagopal, for your time and for the work you do. It's been an honour to have this conversation with you. We look forward to continuing this dialogue and turning these insights into actions. Thank you very much.

Recording of the interview published on YouTube: https://youtu.be/TXj26TcolQA
If you'd like to join us in donating to Pallium India, here's the link to donate: https://palliumindia.org/donate